{"id":1192,"date":"2016-04-30T08:00:30","date_gmt":"2016-04-30T13:00:30","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1192"},"modified":"2016-04-30T08:00:30","modified_gmt":"2016-04-30T13:00:30","slug":"rebecca","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2016\/04\/30\/rebecca\/","title":{"rendered":"INDIVIDUO CON LGMD: Rebecca"},"content":{"rendered":"

04\/30\/2016 \u00a0<\/strong>Intervista a riflettori accesi sulla LGMD<\/strong><\/p>\n

 <\/p>\n

NOME<\/strong>: Rebecca\u00a0\u00a0\u00a0 ET\u00c0<\/strong>: 29 anni\"LGMD2A<\/a><\/p>\n

PAESE<\/strong>: Australia<\/p>\n

Sottotipo LGMD<\/strong>: LGMD2A \/ Calpainopatia<\/p>\n

 <\/p>\n

A che et\u00e0 \u00e8 stata fatta la diagnosi<\/strong>:<\/p>\n

Mi \u00e8 stata diagnosticata la LGMD2A all'et\u00e0 di 26 anni.<\/p>\n

Quali sono stati i primi sintomi<\/strong>:<\/p>\n

I primi sintomi sono stati: difficolt\u00e0 a salire le scale e le pendenze e impossibilit\u00e0 di alzarsi senza usare le mani per alzarsi.<\/p>\n

Avete altri familiari affetti da LGMD:<\/strong><\/p>\n

Sono l'unico su 4.<\/p>\n

Quali sono, secondo lei, le sfide pi\u00f9 grandi da affrontare nella convivenza con la LGMD?<\/strong>:<\/p>\n

La sfida pi\u00f9 grande per me \u00e8 combattere la stanchezza. Pu\u00f2 diventare davvero difficile trovare un equilibrio tra il fare troppo e il non fare abbastanza. Ho scoperto che mi sto adattando ai cambiamenti praticamente ogni anno. \u00c8 anche una sfida non essere cos\u00ec dura con me stessa quando vedo gli altri fare attivit\u00e0 che io non posso fare. Pu\u00f2 essere impegnativo chiedere aiuto quando non riesco a svolgere un compito da sola. Dolore - Non riesco a ricordare l'ultima volta che mi sono svegliata senza sentire dolore, disagio e fragilit\u00e0.<\/p>\n

Qual \u00e8 il suo pi\u00f9 grande risultato<\/strong>:<\/p>\n

Mia figlia ha 10 anni ed \u00e8 la mia pi\u00f9 grande realizzazione. Forse non sono brava in alcune cose della vita, ma posso dire onestamente di essere la mamma migliore! Lei \u00e8 la mia vita. E, mentre cresce, inizia a prendersi cura di me in pi\u00f9 modi.<\/p>\n

In che modo la LGMD l'ha influenzata nel diventare la persona che \u00e8 oggi:<\/strong><\/p>\n

Forse sto diventando fisicamente pi\u00f9 debole nel corpo, ma sono diventato pi\u00f9 forte mentalmente.<\/p>\n

Cosa volete che il mondo sappia della LGMD?<\/strong>:<\/p>\n

Questo significa togliere tutto ci\u00f2 che si conosce.<\/p>\n

Voglio anche che conoscano la Coalition to Cure Calpain 3, l'organizzazione che si occupa di trovare una cura e un trattamento per la LGMD2A.<\/p>\n

Se la vostra LGMD potesse essere \"curata\" domani, quale sarebbe la prima cosa che vorreste fare?<\/strong>:<\/p>\n

Se domani fossi \"guarito\", uscirei con la mia famiglia senza limiti. Correrei con mia figlia e salirei 100 scale.<\/p>\n

Per leggere altre \"interviste LGMD Spotlight\" o per proporsi come volontari per una prossima intervista, visitate il nostro sito web:\u00a0 https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

04\/30\/2016 \u00a0LGMD \u201cSpotlight Interview\u201d   NAME:\u00a0 Rebecca\u00a0\u00a0\u00a0 AGE: 29 years […]<\/p>","protected":false},"author":1,"featured_media":1193,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[51,12,15],"class_list":["post-1192","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-australia","tag-calpainopathy","tag-lgmd2a"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Rebecca - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2016\/04\/30\/rebecca\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Rebecca - 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